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How Are Endocrinologists Helpful For Dysautonomia?


ajw4790
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Hi,

I have been considering trying to get in and see an endocrinologist, especially after seeing that so many people on the board here have had success with them.

I am still unsure to what they do as far as treatment for patients like us? What type to we look for? How have they helped you?

Thanks for any info! :P

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Prior to being in the hospital, my main ans doc was an endo. (Not sure who is running the show now.) I guess the problem is that ans stuff affects so many subsystems/specialties. She has tested me for any number of endocrine problems that affect ans-- thyroid. adrenal, glucose, among others. Not that anything endocrine came back abnormal. I think I gave her 25 (!) vials of blood on my first visit.

It's worth investigating, but I"m not sure that many endos are up on this stuff.

Interestingly, she didn't test for any reporoductive hormone abnormaloties, though my menstrual cycle plays such a role. I'm sure she would be able to, but is probably wary about going that route???? I guess tests for perimenopause are unreliable? FSH can look menopausal one month and normal the next? And she also told me to steer clear of the pill, because of my family history of breast cancer and my migraines with wacky neuro symptoms.

It would be nice to have someone integrate all the different pieces of ans problems-- neuro, cardio, endocrine, etc, but it seems most are pretty specialized.

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A really good endocrinologist may be good at exploring possible endocrine causes that could cause ANS dysfunction.

I don't think there is a really good endo where I live, or I would have gone. I have hashemotos thyroid disease, and my endo just runs a basic thyroid test once a year. My PCP can do that.

Some go to cardiologists, or neurologists also. However, I have heard more stories about frustrating visits with neurologists who can be very disrespectful, and dismissive on the seriousness of this disorder.

Maxine :0)

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Thanks again!

Yeah, I have had the most luck with multiple neurologists and not so much luck with my cardiologist. So, the neurologists are not familiar etc. with everything, so I had thought about finding another specialist.

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Prior to being in the hospital, my main ans doc was an endo. (Not sure who is running the show now.) I guess the problem is that ans stuff affects so many subsystems/specialties. She has tested me for any number of endocrine problems that affect ans-- thyroid. adrenal, glucose, among others. Not that anything endocrine came back abnormal. I think I gave her 25 (!) vials of blood on my first visit.

It's worth investigating, but I"m not sure that many endos are up on this stuff.

It would be nice to have someone integrate all the different pieces of ans problems-- neuro, cardio, endocrine, etc, but it seems most are pretty specialized.

I had a similar experience with the Endo...I guess it ruled out a lot of things, which can be helpful. Now I'm primarily back to seeing an Electrophysiologist who is familiar with POTS and has other POTS patients.

But follow-up visits tended to be quick chats, blood pressure checks (which I can do at home/PCP), and discussing Midodrine dosage (which my Electro is also familiar with).

I got to a point where it was stressful for me juggling work/family/POTS/doctor appointments here there and everywhere. I feel it's important to have a good doctor who knows and understands POTS, and I think it depends on the luck of the draw who that will be in different locales. I also think it's worth some testing to rule out other things just in case, but that's just me!

Good luck!

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Hi,

Thanks for your help! As it turned out with my last appmt. due to increasing frequent episodes of hypoglycemia, without mentioning anything I was referred to an endocrinologist. So, I guess I must have been thinking in the right direction for once!

I have also decided after being discharged from my old cardio. to schedule with another local cardio. that someone on the board recommended. Also, I am going to try to get into see one of the dysautonomia specialists like Grubb. I had to wait a while a try a multitude of things before my drs. would refer me... I am trying to get somewhere with my "time off" from school.

Thanks! :wacko:

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Endocrinologists are good for all sorts of reasons, but for us "special few dysautonomiacs" they can be especially helpful. They see diabetics (diabetes mellitus) VERY frequently and dysautonomia is a frequent side effect of that. Mine was the one to truly firm up this snowball that is now rolling down the hill by finding the orthostatic intolerance (also frequent in many endocrine disorders.) He was thinking Mitral Valve Prolapse initially and that got me to the cardiologist who found the extreme HR reaction, and on and on it goes. It depends on the source, or cause of your symptoms, and many endocrine disorders can cause all the stuff we go through...so, an endo is good to sort out which is the chicken and which is the egg. Just be very clear (so you don't sound like a nut) about ALL your symptoms, that may not even seem like symptoms (I can't tolerate any cold food, drink or weather, who knew that was a symptom of anything?) If your BP is wonky, bring in a log of it. If your menstrual cycles are irregular, bring in your calendar. The more unemotional, factual information you can give, the more likely they are to pinpoint the problem. Good luck, endocrinology is (according to more than one doctor) one of the hardest medical fields and so endos are hard to find sometimes.

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